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Monday, 11 August 2014

You are sitting on the only chair and there is a table. The only other things in the room are a jug filled with diluted bleach, a plastic cup, a laptop with a wi-fi connection and a syringe marked "antidote".

Every three hours, you must sip your way through a cup of the bleach solution. If you choose, you can down it and wait for the next cup. You soon learn that's the best way. There is absolutely no way of avoiding the bleach. If you were to try, you'd be dead within a few days.

Every sip rips through your oesophagus to rest just above your solar plexus in a ball of unspeakable pain. It slices and gnaws and burns like a little part of hell itself.

You come to dread that cup and the jug and even the chair. The only thing you have to distract you is the infinitely captivating world wide web. You can absorb yourself in dramas or documentaries, music or poetry. You can research great conundrums or chat with friends. You can read novels, or play quizzes, you can learn a new language or anesthetise yourself 24 hours straight with cute kittens. But distraction is all you have. The only opiate you can rely on.

You only get one antidote per week. Once you've used it, you must bear the next 6 days no matter what. Constantly you ask yourself, "Is it now? Do I give up now? Can I take any more, even just a few minutes?" Whatever happens, you are the one who has to choose. No-one can do it for you, you're totally alone in the room.

Endlessly, endlessly, endlessly, the thing sustaining you is the thing causing your suffering. The only other option is death, so no matter how hard it gets, how desperate you feel, you have no choice but to keep sipping that bleach. Often you wonder if the mere act of it keeping you alive is enough. Is life really so important that you will go to any lengths to cling to it? Many days you struggle to remember why this life is so much better than the alternative.

But you always remember in the end, always. Every single breath you take whispers "I'm a Mum, I'm a wife, a daughter, a friend." There is simply no "quit" button.

So you sip and you burn in an endless loop.

And it's those final hours just before the week gasps away that are the hardest. Something about imminent relief somehow makes the here-and-now pain harder to bear. You find this odd. Surely it should be the other way around? But like a long car journey, it's always those last few miles from home that seem to take the longest.

You count out every minute. You try everything not to, but clearly time has stopped. Every time you glance at the clock it seems not to have changed. You begin to believe the very laws of physics have altered, just for you.

Soon, you are gritting your teeth through the sheer force of self-denial. You sweat, silent tears falling onto your cheeks. Gutteral, bestial noises escape from you like pressure cooker steam, involuntary and strange, as though they are coming from someone else. They surprise you.

Distraction is in fragments, almost shattered completely. You read the same paragraph over and over and over again, watch the same movie scene. You re-wind and re-peat and re-watch but just cannot snatch a single one of those elusive, whirling, distractions.

At long last, like rain after a long drought, the antidote is yours. You grab it, you're shaking. It's almost too hard to administer it at all. You remind yourself you have to focus for just a few moments more. Finally, you start to feel it, seeping and warm, spreading to every last cell.

The relief is overwhelming - so overwhelming that you start to cry all over again from sheer cathartic release. That relief is like bread to a starving man, like a breath of life itself.

How is it that those clocks sped up? That time now passes in cotton-wool chunks, blurred and casually ignored once again? How is it that relief hours are so much more fleeting than suffering hours? The pain is gone, but only on the surface. Somehow, it's taken you with it, replaced your soul, your very spirit. You're left feeling depressed and anxious but you couldn't say why. You can't explain that sudden lack, that chasm so recently filled with pain, now echoing empty and rootless.

Yet all too soon it is wearing off, seeping away as quietly as it came. You try to hold those anti-dote minutes and hours in every last cell, but it's beyond your control. Everything is beyond your control. Except the table, the cup, the jug........

*************

There is often a terrible paradox in long term illness. The very thing causing your suffering is the one thing you have to do to survive. I have bowel disease but food is not optional, basic sustenance is compulsory. All food is bleach to me. Those with failing lungs still have to breathe, air is their bleach. Those with failing minds still have to think.

Wednesday, 6 August 2014

My disgust at our media has only grown over the last four years. Of all the things that make me sit in horrified wonder throughout this whole rancid mess, it's the lack of balanced reporting over Iain Duncan-Smith's "Welfare Reforms" and particularly, how they are decimating the lives of sick and disabled people.

Don't believe me? Think I'm paranoid or unreasonable?

Let me prove it.

In March 2012 you might remember there was a national panic over some faulty breast implants called "PIP" some 47,000 UK women had these implants and had to consider having the implants removed.

So these women had CHOSEN to have serious surgery to get larger breasts and then had to face that they might need MORE surgery to put things right. A terrible story, certainly, but one of vanity matched with incompetence.

In 2010, it just so happened that the new coalition announced that they would scrap the main disability benefit (Disability Living Allowance or DLA) entirely and replace it, coincidentally with something called "PIP" (Personal Independence Payments). Incidentally, it wasn't in either coalition party manifesto.

Under these reforms some 3.2 MILLION sick and disabled people would be affected and a horrific 600,000 were projected to lose the help they get to leave their homes or pay for care. They would lose in many cases the very right to any kind of social life. They would lose their independence, their freedom to do the things everyone else takes for granted. When the new benefit was announced it was claimed that 20% of the existing "caseload" would be cut.

The DWP have since said

“We were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives.”

Now, even if you don't open links that often, PLEASE click on the following three. The first is a page search from Channel 4 News which shows that 8 out of 10 of the stories returned are about a 3 month cosmetic surgery scandal, yet just 2 are about a 4 year welfare story that has now fallen into total crisis, leaving a quarter of a million sick and disabled people stuck in limbo with no assessments and no payments.

The second is BBC News. This is a much more complicated picture as the results come up in date order. However, even now, in 2014, 2 years after the breast implant scandal, there are as many stories relating to that as to the disability benefit. More tellingly, look through the links and you'll see that incredibly rarely did the disability story make it from the website to the actual news. There are few video links whereas there are many more for the breast implants.

Finally, and most spectacularly, here is ITV News. By the time I got bored of counting there were no fewer than 15 stories about the breast implants and just one - yes one - about the disability benefit affecting 3.2 million sick and disabled people and plunging further into utter chaos by the day

** Sky's news search is so appalling it just brings up random stories of all kinds.

How do I sum up? My horror is so great, my fury so overwhelming, I just don't have the words.

But I suppose I sum up by making it very, very, clear that it is only a matter of time before the full horror of these failures is known. I predict that by the end of this year, the misinformation and chaos at the DWP will be fully revealed and the public might be pretty eager to know how on earth all of this went on, under their very noses, yet no-one told them about it. That barely one journalist made it his or her business to challenge IDS properly or stand up to his bullying.

Not one scheduler made it his or her business to make sure disability stories were slotted in, not one producer cared enough to make sure that sick and disabled people were heard. Barely any interviewers were brave enough to stand their ground, live on air and none would do so repeatedly.

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.